Health Literacy Month: Educating the PF Community on Health-Related Decisions
For more than 20 years, October has been recognized as Health Literacy Month, allowing hospitals, health centers, professional associations, and many other groups to work collaboratively to help patients understand and advocate for their own health.
For patients living with pulmonary fibrosis (PF), a progressive, debilitating, and incurable lung disease that causes scarring in the lungs, the Pulmonary Fibrosis Foundation (PFF) actively provides numerous essential programs designed to promote disease awareness, provide up-to-date information, and communicate the ability of support services. It is through the programs and resources below that the PFF offers hope and inspiration when it comes to making health-related decisions.
Educational Resources
The PFF is committed to providing trusted disease education for the PF community so they can more fully understand the illness in an easy-to-read and use format. To that degree, the PFF offers numerous patient educational resources in a variety of languages, including Spanish; nationwide support groups; downloadable information guides and checklists; position statements produced by a group of clinicians in the field to complement published guidelines; and more. PFF Fact Sheets shed light on different types of interstitial lung disease (ILD), as well as different types of medications commonly used by patients with PF. Visitors to the PFF’s website can also utilize the helpful information and support provided within the PFF Help Center. You can find these resources and more at pulmonaryfibrosis.org.
Educational Videos
Patients can expand their knowledge of PF by watching video series such as “Life with Pulmonary Fibrosis,” which highlights stories from patients, caregivers, and healthcare professionals affected by the disease and answers questions about lung transplantation and other treatment options; “Myths and Misconceptions,” which debunks common PF misunderstandings with medically accurate facts; and “Top 5,” a series that identifies the best ways to pinpoint PF and how to take care of your mental health after diagnosis, and offers tips on oxygen therapy. These videos, along with a library full of words of wisdom, ILD education, COVID-19 support, and other guidance, can be found here on the PFF’s website or on the PFF’s YouTube channel at youtube.com/pulmonaryfibrosisfoundation.
Educational Website
The PFF also has an educational website at AboutPF.org and AboutPF.org/espanol where patients and caregivers can go for easy-to-understand information and to download the PF Risk List of symptoms and risk factors to discuss with their doctor. AboutPF.org also offers a way to find a local pulmonologist through the PFF Care Center Network.
Events
Attending an event is a great way to get involved and learn more about the PFF’s programs and services, educate yourself and others about PF, and connect with other PF advocates.
PFF Summit: The PFF Summit is the PFF’s sixth biennial international healthcare conference on PF. The goal of the Summit is to foster a collaborative environment to improve education and awareness of PF and to identify new approaches to treat, and ultimately cure, this devastating disease. It will feature an innovative continuing medical education (CME/MOC) program for healthcare professionals, a continuing education (CE) program for nurses, respiratory therapists, and pharmacists, and provide sessions for PF patients, caregivers, transplant recipients, and those who have lost a loved one to address their growing educational needs. The virtual event will take place November 8–13 and feature over 30 sessions from prominent thought leaders, physicians, and researchers from the PF community. To learn more about the PFF Summit, visit pulmonaryfibrosis.org/pff-summit.
Pulmonary Fibrosis Awareness Month: Each September, the PFF invites those impacted by PF worldwide to unite for Pulmonary Fibrosis Awareness Month and drive awareness for the disease. As part of its annual observance, the PFF launches a “30 Facts in 30 Days” campaign in which trusted, medically accurate facts about PF are shared on social media; encourages individuals to share their PF story through its “Portraits of PF” series; promotes #BlueUp4PF activities that include decorating in blue and asking local landmarks or buildings to change their lighting to blue; and provides a mechanism for the PF community to raise funds by creating personalized fundraising campaigns such as bake sales, sending friends PFF bracelets in exchange for donations, or starting Facebook fundraisers and sharing stories with friends and followers.
National PFF Walk Day: Patients, families, and friends across the country are encouraged to bring the spirit of the PFF Walk to their communities and take one step forward in the search for a cure. Participants can create a team or register as individuals, raise funds for research, education, and advocacy, and even interact with their fellow walkers through “Kickoff” and “Stories of Impact” events and a celebration party to commemorate the PF community’s achievements. This year’s celebration party will take place on October 23 and stream live on Facebook and YouTube.
Webinars: The PFF maintains an ongoing webinar series to educate patients and caregivers on topics such as interstitial lung disease, the role genetics play in PF diagnoses, symptom management, and more. Regular updates on PF research and the COVID-19 landscape are also provided.
For more information about PF, please visit www.AboutPF.org, contact the PFF Help Center at 844.TalkPFF (844.825.5733), or email help@pulmonaryfibrosis.org.
